Today, the New York Times published a long story on hospice and palliative care, and how doctors struggle with balancing the transition from active treatment to palliative care in the final stages of terminal illnesses. Some of it is worked within the context of the current “debate” around advance directives in the health care reform debate.

Here’s an excerpt from “At the End, Offering Not a Cure, But Comfort“:

Most doctors do not excel at delivering bad news, decades of studies show, if only because it goes against their training to save lives, not end them. But Dr. O’Mahony, who works at Montefiore Medical Center in the Bronx, belongs to a class of doctors, known as palliative care specialists, who have made death their life’s work. They study how to deliver bad news, and they do it again and again. They know secrets like who, as a rule, takes it better. They know who is more likely to suffer silently, and when is the best time to suggest a do-not-resuscitate order.

Palliative care has become a recognized subspecialty, with fellowships, hospital departments and medical school courses aimed at managing patients’ last months. It has also become a focus of attacks on plans to overhaul the nation’s medical system, with false but persistent rumors that the government will set up “death panels” to decide who deserves treatment. Many physicians dismiss these complaints as an absurd caricature of what palliative medicine is all about.

Still, as an aging population wrangles with how to gracefully face the certainty of death, the moral and economic questions presented by palliative care are unavoidable: How much do we want, and need, to know about the inevitable? Is the withholding of heroic treatment a blessing, a rationing of medical care or a step toward euthanasia?

Facing the end stages of a terminal illness is the focus of this very long article. And it comes as something of a non sequitur when NDY president Diane Coleman is quoted toward the end of the article:

In the political wars over end-of-life care, advocacy groups for the disabled are often as adamant as religious groups in challenging measures that could be seen as hastening death. “Health care providers encounter people at a time of crisis; they see the worst happening,” said Diane Coleman, the founder of an advocacy group for the disabled, Not Dead Yet. “They don’t see them get through it and say, ‘Even with my functional losses, I’m still having a good time.’ ”

In the wrenching context of imminently dying, Coleman’s statements come across as irrelevant at best.

So what happened?

Diane Coleman was interviewed by this reporter for 45 minutes. And the context of that longer conversation covered much broader ground. For example, they discussed “futility” policies. They also discussed how advance directives can apply when someone is critically injured – and whether they live or die depends on the choices made and the treatments given or withheld. They discussed Peter Singer’s essay on “rationing” – in which he suggested that people with significant disabilities could be legitimately be denied health care based on their disability status – an essay which was published in the NY Times Magazine. (Singer and his essay aren’t mentioned in the article)

The end result of using this particular quote – accurate in the context of the conversation with the reporter – is that Coleman and NDY come off as being confused and off-the-mark.

That’s a risk whenever you do an interview that will be edited – for print or broadcast media.

It would be interesting to know if the decontextualized quoting was the work of the reporter – or if it was her editor’s pen at work.

After all, even if they didn’t mention Singer’s essay on rationing, they’re well aware of NDY’s role in enlisting disability advocates to denounce the piece – and the editorial choices that led to its publication. –Stephen Drake